Hard Cases: Autonomy Run Amok

Dr. Jessica Zitter

LinkedIn Healthcare Channel – Hard Cases

The patient in ICU bed 13 had been receiving progressively invasive treatments for an incurable disease. She was in her early 30s, and the medics found her in septic shock in a crack house in Newark, New Jersey. The dirty needles lying next to her had transmitted bacteria from her skin into her bloodstream, then to her ragged heart valve. The growing clot of bacterial slime could be seen on the echocardiogram, hanging on to the fragile heart valve like a cowboy riding a bull. With every beat, clumps of bacteria were sprayed throughout her body. Pus pockets were blossoming in her brain, her spleen, her kidneys. Her brainwave activity was next to nothing on the EEG. Her feet, overcome by infection, were turning black as they began to die.

It was as gruesome as it sounds. Even though antibiotics were on board, they would never eradicate the problem. The bacteria were too dug in. These cases can only be cured by heart surgery, during which the surgeon cuts out the diseased valve and stitches a clean one into its place. But the surgical service and cardiologists, after considering the risks and benefits, had decided surgery was too dangerous, given her level of organ failure. And the neurologists believed her brain damage was likely permanent. On day 5, the ICU team met with the family to discuss the grim situation and explain that even though her heart continued to beat on life support, she was dying.

There were several family members who came in, including two of the patient’s children, both in their twenties. After hearing the news, the family was quiet at first, but seemed to be gathering some kind of fierce energy. Whether it was grief, guilt, or shame about the patient’s life, they erupted into accusations and blame. How had the doctors failed to make her better? Why hadn’t they gotten a second opinion on the heart surgery? And what were they planning to do to fix her dying feet?

The doctors explained that amputating her feet made no sense if her heart wasn’t going to be fixed. And her heart couldn’t be fixed. Even if the surgeons removed the dying tissue in her feet, the patient’s infected heart valve would continue to shower bacterial bombs down the length of her extremities, setting up new colonies to wreak havoc.

But the family did not back down. They continued to insist that something be done. It was illogical, but understandable. The conversation was taking place around her bed, and her feet were impossible to ignore. They lay uncovered, too inflamed and fragile to cover with blankets. They were black and grotesquely deformed. In them, the physicians saw their own failure — to cure, to save, to fix. And her children, I imagine, saw failure too. Those feet may have triggered all kinds of personal trauma, and possibly symbolized the one thing they could, at this late stage, ensure got fixed. Certainly it was easier to fix septic feet than a life, or a childhood. And it is easier to show anger than sorrow.

The doctors sat stunned, as if having suffered a collective slap on the cheek. The insults and accusations kept coming. The admonitions to amputate the patient’s feet. Even the weathered attending sat chastened in her seat. The ICU fellow dug her hands further into the pockets of her white coat, her knuckles visible through the cloth. The residents and medical students, protected by their low status, watched in fascination and embarrassment as their mentors got roundly berated.

“Listen,” barked one family member. “Make it right. We expect you to fix her. Get it?” In one move, she snapped out of her chair, grabbed her purse and strode to the door. She flung it open, the metal handle hitting the wall. The rest of the family followed suit.

The team sat in silence. The attending mumbled something about everyone having done a great job. “Well,” she said, clearing her throat, “we’re going to just have to keep going. I guess they need some more time. Those feet are going to have to come off or she’ll get septic again. Let’s call the surgeons.”

A guillotine amputation is exactly what it sounds like. The surgeons take what amounts to a hacksaw to the leg and cut straight down, leaving it in cross-section. This approach is done when a patient has persistent infection so that a flap closure is not possible. Before they rolled her from the ICU to the operating room, the surgeons stood at her bedside shaking their heads. “We’re going to need to guillotine both sides,” one said.

And so they did.

The patient died ten days and two more surgeries later. She never woke up. Even on pain medications and unconscious, patients may still experience suffering. In this case, we’ll never know.

As a doctor, I have had much experience in dealing with families demanding treatments I thought unreasonable. There are many reasons why this can happen: grief, a sense of deprivation, the revival of old traumas with impending loss. And the reality is that even when the treatments demanded are patently inappropriate, it is very difficult for the healthcare team say no to a family continuing to demand them regardless.

Autonomy is one of the pillars of traditional medical ethics. Theoretically, the patient, or their surrogate, should be best equipped to know what is right for the patient. But in our consumer culture, where more is almost always assumed to be better, I believe we have lost sight of its original intent. It has morphed into something that I call “autonomy run amok.” Instead of pursuing reasonable care aligned around the patient’s values and preferences, continued treatment—just “do everything”—becomes the end in itself. If a request is insisted upon, it is often granted.

It is true, of course, that everyone has different preferences, and I firmly believe these should be respected. What one person feels is burdensome and unreasonable care may to another feel appropriate. Yet there are some requests that actually run counter to another pillar of medical ethics, “Do No Harm.” With these requests, the sad irony is that the primary victim of this kind of care is the patient himself.

So what is a doctor to do when a family demands something that simply makes no sense, and will only add to the burden of suffering? Many doctors face these kinds of insistent requests from families, despite every attempt to persuade the family otherwise. Some doctors choose to say no—which can engender conflict and various complications—while others feel compelled to follow the family’s instructions. While this was a particularly awful case, with a particularly insistent family, it is emblematic of a larger problem. I have many friends who are very reasonable people, but with a loved one in the hospital, they move into “do everything” mode, where they do not understand, or even believe, that certain treatments will do nothing but increase the burden of suffering upon their loved one.

I believe that as a medical community we must be able to put some limits on what we will do to a dying body. How can we do this even as we honor and protect the patient’s genuine autonomy?

There are no easy answers here, but I believe the best solution always rests in increased communication, ideally as early as possible. Doctors must get the skills and the support needed to break bad news—something we are not currently trained in. We must learn to hold our ground in the face of emotion, allowing space for the anger and grief that need a place to land. I don’t believe that even the angriest families want doctors to hurt their loved ones by performing non-beneficial treatments on them. Rather, I believe they want to feel their loved one is being cared for. Attentive listening and the ability to respond appropriately to emotion, while holding gently but firmly to the message, can go a long way in calming the most searing desperation. This is where we doctors have our work cut out for us.

And for laypeople, it’s important to remember that the doctor is just a human being, with human tendencies to strive to please, fix, and do what you insist on, even if it’s not in your loved one’s best interest. So if you find yourself in a position where you are insisting upon a treatment that your doctor seems reluctant to administer, my advice is to pause, take a few deep breaths, and really try to hear what your doctor is telling you. Then give yourself some time and space to process your feelings. Then, once you feel a little more peace, ask yourself what would genuinely be best for your loved one.

The impending death of a loved one invariably brings with it difficult emotions. If unaddressed, they can wreak havoc on a dying patient’s final days.

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